Managing the work/shambles balance | Mark Holborow

EPISODE TRANSCRIPT

Mark A

Hello, and welcome to episode 44 of Neuroshambles. As ever, it is an honor to have your ears, fellow Neuroshamblers, so thanks for joining me. I thought I'd start by talking about a listener survey that I put out in the summer, which Was aimed at getting some candid, anonymous feedback from you lot about how you feel about the show and what I can do to improve it for you. I asked a bunch of questions and I had loads of great responses. So thank you so much for taking the time to do that, those of you that did. I just thought it'd be interesting to give you a quick summary of the responses. Now the vast majority of you like the blend of topics and the mix of guests and the episode length, which is great, so there are no plans to change any of those I also had some cracking suggestions on topics for future shows as well, which is very pleasing. It gives me lots to work from. Quite a few of you did not like the occasional poems I do, about a quarter of respondents. So I'm definitely going to take that on board, you bloody Philistines Anyway, I'm joking. I appreciate that it's not for everyone, so I'm going to keep that sort of thing for the socials. You won't be hearing it on the podcast from now on. The other thing I did was to ask whether people would be interested in attending a live show if it was near them. And I had a surprisingly positive response to that, overwhelmingly favorable. it's definitely something I'm going to be looking into in the new year. Because I love doing live shows anyway. You know, I'm from a stand up background. So I'm really excited about the possibility of doing a live show and recording it and getting fellow Neuroshamblers together. So, my plan is to do a trial one, see how that goes, and if it works, maybe do some more. Who knows? So watch out for a further announcement when I've had time to get my shit together on that front. If you haven't had a chance to respond or you didn't even know the survey existed, I'm going to put a link to it in the show notes so that you can offer your feedback on the future direction of the podcast. Okay, so now the admin is out of the way, let's get into this week's episode, which features a first time guest talking about a topic that is particularly close to my heart. and hopefully some others as well. There are also going to be some neurodiversity champions, some tiny epic wins, what the flip moments, and absolutely no poems. So you're safe on that front. Anyway, what are we waiting for? Let's dive in.

SECTION INTRO

Meet the guest.

Mark A

One of the things I'm keen to do with Neuroshambles is to showcase as wide a range of different voices as possible. So it's not just advocates and professionals I want to hear from, though obviously I love speaking to them. I also really want to hear the perspectives of other similarly frazzled parents who are just as committed to advocating for the needs of their neurodivergent kids, just not in a professional capacity. So that leads me on to this week's guest. He is a regular NeuroShambles listener who emailed me a few months ago to say how much the tackling ignorance episodes resonated with him, which is obviously lovely to hear. So I responded to his email to tell him as much. He replied back. One thing led to another. And, well, I ended up inviting him on the show to share his experiences. And here we are. He is a devoted dad of two kids trying to make sense of his own neuro shambolic setup. So I am delighted to be able to welcome onto the show it's Mark Holborough. How you doing, Mark?

Mark H

I'm good, thanks. Thanks for the invite, I think.

Mark A

Yes. Well, thank me at the end if it hasn't been too painful for you. So obviously, with any guest that I get into NeuroShamels, it's important to understand a bit more about your setup. So what neurodivergencies are at play in your household, Mark?

Mark H

So I two kids, as you said, the elder is eight. Ben, he is diagnosed with autism and ADHD.

Mark A

Okay, double whammy.

Mark H

Which we got we got the paperwork sorted at the start of March. So we're very much a newbie in this world. The younger at the moment appears to be neurotypical.

Mark A

Don't jinx it, Mark.

Mark H

He's got plenty of time to lean into that and make himself more interesting.

Mark A

How old's the younger one?

Mark H

So Tom's five.

Mark A

Right, okay. So a couple of years in between them.

Mark H

Wife at home, Louise, who is frankly a superhero, doesn't work at the moment, but does everything and keeps us all sane. and myself as well, obviously working full time five days a week. We are both on paper neurotypical.

Mark A

Okay.

Mark H

The more you learn, the more you wonder.

Mark A

I don't think you can be on paper. You can't get diagnosed with neurotypicality.

Mark H

True. Off paper. We have no papers.

Mark A

Yeah. All right. Well, thanks for introducing me to your setup. I'm keen to get into this one because I'd started I started thinking about it. The more I dug, the more I got into the rabbit hole of this particular topic. So let's get into it.

SECTION INTRO

What's the topic of the week?

Mark A

Okay, so the topic of the week this week is something that I've been wanting to talk about for a while now because it is something that I personally find quite difficult to navigate. And that is the challenge of holding down a job in addition to coping with the everyday demands of a neurosymbolic home life. Now I should say that given the nature of raising our kids with the increased care needs they have, it's not always possible to also work a regular day job. Very often, at least one parent has to make the difficult decision not to work, which in itself can be incredibly hard. So I appreciate I'm not going to be speaking to all Neuroshambles listeners on this episode. Having said that, it is an interesting perspective that I don't think is discussed very often. So I wanted to shine a light onto some of the challenges that working parents face. Full disclosure from my part, as well as doing this podcast and co-parenting my kids, I also work a full time day job, which I will refer to deliberately vaguely as the IT industry. And I love what I do. It's a it's a core part of who I am. How about you, Mark? Tell tell me a little bit about your work life balance. You said you work full time five days a week. Is that right?

Mark H

Yeah, full-time and what feels like more than full-time occasionally. So I'm a licensed encounter practitioner.

Mark A

Okay.

Mark H

And I've bored my way up to be a partner at an accountancy firm.

Mark A

Okay. So how long have you been there then?

Mark H

This particular firm I've been nearly three years. Okay. So I've been doing it for about 20 years in total. Yes, the nature of the job is there's a lot of there's a lot of business development, there's a lot of event, there's a lot of going out in the evenings, going out to here, there and everywhere and traveling around the country nights away as well. So I say five days a week, depending on what day that might be, it could be a forty eight hour two days followed by three days of normal working as well.

Mark A

Yeah, obviously. And you have a a kind of a a mixture of working from home and working in an office, don't you?

Mark H

Yeah, I go I go where I need to go a lot of the time. So I usually have At least one, if not two days, working from home and then three days, which will be in an office or somewhere around the countryside.

Mark A

Yeah, so because I work from home pretty much all the time. I do sort of have to go to events away, conferences and stuff, but, you know, once or twice a year. Most of the time I'm working from home. I might have to go visit a client, but I can get there and back in a day, so it's not too dramatic. But working from home that has a lot of benefits. There are a lot of benefits of that. Like I can be in the house when my kids are back from school because realistically they can't attend after school club as a lot of neurotypical kids can. You know, working parents will just sort of work the full nine to five and then the kids will be in breakfast club or after school club to facilitate that. That's not realistically an option for me. Otto and India do, you know, one day a week but it's never been a thing that Jay has been able to tolerate at all. So he's always sort of been back. And because I work from home, that's a massive advantage because I'm in the house. He can come in and then just go and hang out in his Room and regulate, and he's not too disruptive because he needs downtime after the end of a school day, which is great. But obviously, with working from home, as you can a test. There are challenges with this because it's not like a typical office environment. There are inevitably a lot of interruptions for me. Do you have that when you're working from home?

Mark H

We so I mostly started working from home during COVID. So they were both pretty young at the time. Okay. Tom was like one. And we've got one room in the house, which is my office. And we've kind of drilled into them that if the door's closed daddy's working. So 10 daddies not they I get occasional notes pushed under the door and things like that. It doesn't stop chaos kicking off right outside the door. But they kind of get the message of if that door's closed, pretend daddy's not actually in the house.

Mark A

Oh, I'd love to have that.

Mark H

It kind of went too far at one point, because there was one point I was working from home and got to about quarter to six and I opened my office door and walked into the kitchen where the boys were having tea. And Ben was like, where did you come from? I was like, well, I I was oh you literally had forgotten I was here, hadn't you?

Mark A

Yeah, I see, I have My kids I think they're getting a bit better now actually, but it's taken them a long time to understand that I'm working because You know, essentially, I'm just in a room in the house, right? Sat at my computer. And they're very used to you know, I spend a lot of time working on the podcast and editing the podcast. They typically they walk in, they don't know what I'm working on. They just see that I'm here and That I'm available.

Mark H

I mean, these are kids that don't see a bathroom door as a barrier to coming in and having a chat to you about what's going on. So, what's an office door?

Mark A

Yeah, they don't respect anything. So, I've had a few interruptions. with clients on the call. So I spend a lot of time talking to clients and quite in-depth conversations about IT stuff, quite intense conversations. And there have been two quite disastrous interruptions. One was when Jay just burst in fully naked Right. As I'm chatting to someone, and that is, as you can imagine, full-on panic mode. That's worst-case scenario for me, right? As he's he walks in demanding something. I don't know what I can't. I wasn't thinking about what he was demanding. I was thinking about protecting everybody. So, you know, obviously, like, turn off the camera, put the microphone on mute, and go, I'm on a call. You're fully naked. Can we not? Can we not? So, you know, and then he sort of huffs off. So I think I like it feels like I should have you know, you know, like recording studios have an on air sign that goes like red. It feels like I should have that. So it's like a bit more visible. That was not the worst of the interruptions I've had. The worst of the interruptions I've had, which I think I've talked about on a previous episode. It may well have been the one about personal hygiene. Was from Otto. Otto has historically had a bit of trouble wiping his bum after the toilet, so he needed help. With that. So once when I was on a call, he burst in again naked from the waist down, which for some reason, if he's got a t-shirt on, he's naked from the waist down. It's weirdly more offensive. And he just sort of bent over and pulled his butt cheeks apart and went, Is it clean, Daddy? I'm on a call with several people. It was an internal call, fortunately, but it was again one of those mortifying moments where your sort of your home life and your work life collide. dramatically. And again, just quick find the camera off button and the mute button and try and resolve it. I'm not sure I even got the mute button. I was prioritizing the visuals at at the start.

Mark H

And it seems to know that goes one of two ways, doesn't it? Either you're going to spend the next half hour desperately trying to explain it, or everyone's going to go, we'll just pretend we didn't see that and move on, shall we?

Mark A

Unfortunately, it was an internal call and so my colleagues are, you know, are pretty sad. That would have been worse if it was with a client. Yeah, I had to sort of shepherd him away going, no, it's spotless. It's spotless, Otto. Just get out, get out. And now fortunately, that was sort of we have a policy now of recording all of our calls.

Mark H

Oh.

Mark A

Right. For AI purposes, we do a lot of work in AI. So we record a lot of calls. We did not do that one. So that was good because I I would not want the rigmroll of having to go past the rigging go through the recordings and like delete them. Oh, do you just don't That's a whole other headache and one of the risks of working from home. But it's a hard concept for our kids to get, I think, the working from home thing, typically.

Mark H

Yeah. And it is to be honest, the the whole working concept. took a while to get through their heads.

Mark A

Yeah.

Mark H

Because there was just the sort of, oh, Daddy's going out to have fun. Daddy's just going out. And it's like, well, well, no. This pays for all the groceries, this paid but the house, this is quite important, but but why can't you play with me more? Well Because if I don't do this, we don't get food.

Mark A

Yes, it's really interesting. It's such a nebulous concept for them, isn't it? Um, I guess. I mean, India still now to this day, if you ask what daddy does for a living. It's just chatting. I'm just chatting because she sees me talking to clients. That's all I do. I'm just chatting to people. It's like, no, it's so much more than that. And the other thing is, when I'm interrupted, like I don't want to shoo my kids away. It's hard. That's a hard thing to have to do, is to have that panic. Because I don't want to put up that barrier and between the work life and the home life a lot of the time. I don't want to just sort of shoo them away like naughty pigeons I want to have a chat with them, but it's quite difficult to explain in that moment when you don't have the time. And sometimes you might want to have to have a debrief after it, but it's gone then. They're not, you know, in the moment. And it's. Sort of doesn't really relate to anything at that point.

Mark H

I find particularly for the ADHD side of things, obviously, when they're having fun, they really start having a lot of fun. And it gets louder and louder. And you sort of sit in there, and I find myself occasionally sitting there going, Well, this isn't them kicking off. This isn't a meltdown. It's not something that needs sort of direct intervention. They're having fun in their house and they're letting loose.

Mark A

Yes.

Mark H

Do I really have the right to open the door and basically go, shut the f up? I'm trying to do some work. It's like, well. Well, I chose to work from home at this day, and I can't really have a go at you for having fun because you're just being you, but It's still massively disruptive.

Mark A

Yeah, the background, yeah, there's constant squawking and stimming, and Jay kicks the wall. A lot. He's in the room next door, so he kicks the wall and it sounds like a bailiff's trying to break in. And obviously, I have to explain to people that it's just my child. He's fine. He's not angry. He's just, you know, it's just what he does. And uh also he sings to himself a lot and sometimes uh that gets picked up. But that's a nice sound, do you know what I mean? These are all like the sound of kids laughing and It is, like you say, it's noisier than the average household. It's always chaotic and it sometimes sounds like rioting sometimes. But it's not it's a noise that we're used to. That I don't think other people are. So if they hear that on a call, they might be thinking, What the hell is going on there? And you can't really explain that.

Mark H

to people. I wear a headset at home. I never do anything straight off the computer because it picks up way too much. They get the happy little burbly little voices in the background. And I've had a comment after a a fairly intense board call of a company that was basically falling over at the time. Where at the end of the call, the chairman stayed on to debrief and he was like, really calm and relaxing just to hear your kid kind of Burbling away in the background.

Mark A

You don't know the half of it, mate.

Mark H

I was like, no, he was refusing to eat dinner. At one point, most of it ended up on the floor. basically like he was kicking off in the kitchen, but that was two doors from my office. So what he heard was, it's really nice hearing your kids having fun in the background. And I was like That wasn't fun.

Mark A

Yeah, there is there is uh that other side of it as well sometimes when because like like you say, when it's playing or it's just general hubbub. And the hubbub is a lot louder than typical hubbub. But in our house, that's okay. But sometimes you do hear stuff that needs parental intervention. And it's really hard to not get involved sometimes. If I'm on a call and I like, I can't just end a call and go and like deal with that issue very easily. But typically that was when Tam was in the house as well. So there's it's difficult sometimes not stepping in, knowing that your partner is in the house having to deal with this.

Mark H

Yeah, and it adds an interesting dynamic because Ben reacts to me generally better than he does to Louise when he's melting down. And I don't know whether it's a male thing, whether it's what it is he's picking up, but he generally will calm down and talk to me a bit quicker than he will Louise. But at the same time, you sit there and you hear it all hit the fan, and you kind of go, Well, I am working and I need to be working. So I don't really want to interrupt that and go out there to sort that out because that's not really what I'm supposed to be doing in these hours. But the other bit is I don't ever want to undermine Louise. No, Louise is amazing and an absolute superhero and keeps us all on the straight and narrow. But there's times where it all starts kicking off and you sort of go well, I want to help, but at the same time, there's me going out there just undercut the foundations she's been building and kind of how she's dealing with the situation.

Mark A

Yeah.

Mark H

And if I wasn't here, she'd be dealing with it herself and they'd just have to put up with life themselves. And you're sort of going, well It's kind of my place, but not my place, to try and help in the situation.

Mark A

Yeah, yeah. I mean, duh when in the early days, we had a thing where Tam would text me if it was absolutely like, look, one is absolutely melting down and the other one's kicking off. can divide and conquer. And typically I would, you know, I would do it if I could and it would be fine. But yeah, it's a it's a tricky thing to be in the house but not be a parent.

Mark H

Yeah. Yeah. And it is it's getting into those kind of those hats you wear. And at this point in time, I'm having to be the guy at work and pretend that I'm in an office despite the fact. All hell is breaking loose behind us. Yes.

Mark A

And sometimes, as well, to be honest, I want to go out there and have fun. They're having a whale of a time. I'm like, I'd love to go get involved in that. And, you know, and I'm doing some kind of like. massive proposal for something and it's tedious as hell. And I could like dude, they're they're like wrestling on the bed. That'd be really fun to have a little break. But I can't do it, you know.

Mark H

Water fights and ice creams. They're the ones that get me. Late on a Thursday, they come home from school, crack open the ice cream, then have a water fight. And you're sitting there sweating in a little box with no aircon, desperately trying to get a project out.

Mark A

And you're like, Come on.

Mark H

Yeah, it's okay.

Mark A

So it's it's not all fun. The other thing, um, that is an interesting dynamic that you have that I don't is that you are in the office pretty regularly. So you leave the house and do that. So you're sidestepping the issues of working from home and the interruptions and the background noise and that side of things. But you're also having to navigate other issues with the logistics of leaving the house. And how does that work? So, what's the routine look like when you do that?

Mark H

So I over the last sort of couple of years have shifted. I used to basically get up and go because, hey, normal life, you just get up and do your thing, right? And I gradually shifted so I was leaving slightly later and slightly later so that I could help the boys get up, make them I mean, the ADHD again kicks in, you have to constantly just stand there and go, right, now put your shoes on. get dressed. No, no, no, stop reading that book, put the tablet down, shepherding all the way. So I shifted so I was leaving home a little bit later. So that I kind of left at the same time as they were going off to school. Right. Okay. Started working. But been used to, certainly in the last couple of terms, has had bits of school refusal. So. Just get your shoes on. Okay.

Mark A

Yeah, okay.

Mark H

And if you're working from home, you've got that extra kind of half hour, 45 minutes. You can still log on at the same time, but you've got more kind of spare time there to deal with it. If you're going in for a meeting, I've basically had to be in a position occasionally where I'm like, Well, I'm done. This is your problem, dear. See ya. Yeah, which is so hard to do, isn't it? You just feel like an absolute asshole, to be blunt. I mean, you get to work and you're just like, Well, I've just left her completely in the crap. I've no idea how he's reacted to it or even if he's got into school. And now I'm supposed to be sitting here holding this lovely formal meeting where I'm trying to impress someone or talk about a really serious situation. And your brain's just kind of going, oh, what did I leave behind? What am I going to walk back into? Oh, Christ.

Mark A

Is the process of you leaving dysregulating for them as well? Because that's a transition that you know, you've been there and then you're going and d do they sort of not want you to go sometimes?

Mark H

Or I think he's sufficiently self-centered that he doesn't really care what I do, to be honest. I mean, he loves being around me, don't get me wrong.

Mark A

I'm not saying he doesn't.

Mark H

particularly in the mornings, he couldn't give a monkey what anyone else was doing. It's all about him and his itchy feet. It's not actually itchy feet, it's his brain's too full. There's too much water in his bucket and it's overflowing.

Mark A

Yes, yeah, so it then comes out in a sense of dysregulation.

Mark H

My shoes are uncomfortable. I've got itchy feet. Well, we could buy you new shoes, but that's not actually the problem, is it?

Mark A

Shoes are a massive thing. This is, yeah, again, that's why leaving the house is such a problem. And I found that, like you're saying, it's uh when their bucket is full. that's one of the first things to go. Clothing becomes the first thing that makes it makes things transition really difficult.

Mark H

Ben is I've I've managed to get through to Ben using the kind of bucket analogy and kind of going if your bucket was kind of empty, if you weren't stressed about all of this other stuff going on you wouldn't care about your shoes. It would be a few more drops. But when your bucket full of all of this stuff you're trying to do and think about and you're stressed Those little drops make it overflow.

Mark A

Yeah.

Mark H

And trying to sort of position it with him that it's like, this isn't actually itchy feet. This is itchy brain.

Mark A

Does he understand that, though?

Mark H

He has it taken a bit, but he has referred in a conversation to me to his bucket being full. So it's obviously made a connection somewhere along the way and he's starting to get it. So we're trying to use that kind of language and go when we can see that he's really fizzy and starting to go over the top. It's like, well, actually. This is a bucket full situation. This is, you're tired. We're asking you to do new things. Your bucket's full. Are the socks really a problem?

Mark A

It doesn't stop his feet from being sensitive and itchy, though. That's the thing, isn't it? It's just like this. We're understanding why this is now an issue when previously it wasn't, but he's not going to be the one that's able to change that. You know, it's like, actually, let's look at the inputs that we can reduce to remove some of that water. Than regulate you more. Sometimes, if I'm going a away for a little bit, India gets a little bit dysregulated and wants doesn't want me to go. As you say, Jay couldn't give a hoot, and Otto is Just doing his own thing. At least one of them's going to miss me. But she gets upset and that's hard. That's hard to leave when that happens, when to walk out the door. Like I've had that sometimes where I've sort of gone out the door and I've sat in my car and just been like Just felt awful. Just felt awful because I've created that dysregulation. And then I get, you know, I would get a text from Tam later on going, she's totally fine now. Like, you know, within minutes. But I feel dreadful, like leaving in that situation. And it's it's quite a hard thing to deal with. And I think that feeds in a little bit. And I wanted to talk about the guilt that you feel as a parent who works. because it's on multiple ways. It's not just sort of leaving behind the dysregulation or l or or causing the dysregulation by leaving or by sort of closing the door and saying you can't come in because I'm on an important call. There's a guilt about the fact that work in our world is kind of a privilege. You know, like working is hard. There's no question, right? It's hard. particularly if you're having a difficult time at home. And sometimes it's very difficult not to bring that fatigue into the workplace sometimes, which I'm sure we'll get on to. It is preferable to spending all day, every day, caring for your neurodivergent kids. And I want to be really clear, that's not because I don't love spending time with them. I genuinely do. They are wicked. And they are fun, but it's because we get to have a life outside of that family Right. You get to have a role as a person, not just as a parent, as a dad of neurodivergent kids. You are a person. In amongst other people who don't know anything about the sh shit that we have to deal with at home sometimes. And that feels like a privilege. And that with that comes guilt.

Mark H

Yeah, absolutely. And it's. It's part of how you define yourself. If someone says, Hi, how are you? Or what do you do? It's very easy for us to go I'm a partner of this, I'm a data analyst of that, I'm a you almost define yourself by your working role. You wouldn't walk up to someone and go, I'm a dad of three and we're all really fizzy. And by the way, I do this awesome podcast. Oh yeah, and I've got a job. Your brain will always automatically go, I've got a job, and this is my job, and this is my role. Oh, yeah, and I've got a couple of kids.

Mark A

Depends who I'm talking to. If I don't want to talk to them, I'll tell them of the job first. Because everyone switches off when you say IT. It's like, yeah, you don't need to know more about me But yes, you're right. It is something that defines you outside of your neuro-symbolic lifestyle.

Mark H

Yeah, and I think the I mean a my wife doesn't work which started off as just very practical reasons of frankly child minding cost and absolute sodding arm and a leg and then moved into bend shaped issues of, well, actually, this just practically is impossible.

Mark A

It just will not and cannot work. And when you say she doesn't work, that's so not reflective. Do you know what I mean? It's not reflective of actually. With respect, Mark, she's working harder than you.

Mark H

Oh, damn right. Because it's exhausting.

Mark A

And I g get that as well. Like, when I'm at work, I'm aware that it's much easier. You know, I'm not having to deal with the same level of stress and the emotional uh turmoil of seeing your kids dysregulated and and upset. And you know, you could have a client being dysregulated and upset and, you know I can fire clients. I cannot fire my children. So, yeah, that sort of comes back to this sort of having a job gives you this a self identity, I guess, to help you feel like you're playing an active role in the outside world. And being a parent of neurodivergent kids is very very insular by nature. you have to focus inwards because that's where all of your energy needs to be. But that chips away at self-esteem and self-identity and Yeah, it's must it's really hard. Yeah.

Mark H

Yeah, you become become kind of single-faceted. You become mum. And it's very hard to start trying to f define yourself as anything other than that one thing that you spend your entire damn life dealing with. And it's we've had conversations between us on a fairly regular basis of kind of going, well, how do we try and balance this? Because from a very pragmatic and practical way, it's not like I can drop down to four days a week. It's not like I can cut my working hours. Because I've got to a certain level where you kind of have to maintain it. And frankly, we have to maintain our mortgage as much as everything else. Yeah, there is that practical discussion that you need to have, right?

Mark A

And it's you know, frustratingly, it's a financial decision, I think, uh above anything else, is that at some point you have to go, Well, you know, I earn more than you, so it makes financial sense that I do more. I don't want to say do more work because that's absolutely not representative of the truth.

Mark H

Charge flowers. You do more charge flowers rather than act.

Mark A

Yeah, exactly. Is that you do more childcare and Very often I think and this is indicative of a much bigger societal issue in terms of the gender pay gap, but very often it falls to the women to be the carers, which is That's a whole different podcast. But it is sort of explains why that very often falls to it. It's not just because Women in general are seen as more nurturing, which it can be seen as the case. I think it's much more to do with the logistics. The finances of that.

Mark H

Yeah, and it is driven by pragmatism. You need the pound notes flowing in at the end of the day, being brutal and hard-nosed about it. There's a certain amount of money that you simply need to live. Yes, yeah, yeah, yeah. it's finding the the most efficient way possible to do that. But Louise's role, I can do it. She's way better than I am at just about everything, to be frank. I got quite lucky that I found a career that actually seems to like the way I go about the world.

Mark A

So, yes, there's definitely a guilt there that I get to have a job while my partner is parenting a lot more than me. I think it's worth kind of considering how to redress the balance and what you can do. Do you I mean, I know that I did some days in the early days. Well, Tam was on maternity leave initially, so I was doing a lot of that, and I was working. And then went back to work, but for fewer days than me. But it's how you can find a way to provide some respite to the parent that is shouldering the burden.

Mark H

Yeah, and I think the fact both of ours are in school. So Tom the younger has just gone into what's now called year one. So he's gone into his second year at school. which means that term time, Monday to Friday, kind of nine thirty till three is open time for Louise now during that time she does. Shed loads of stuff like sorting the house out and groceries and you know all of that.

Mark A

And just actually making life happen. I'm imagining special needs admin forms are a large part of that as well. One.

Mark H

Oh, the joy of that. Which is separate episode, but it's intense.

Mark A

Oh, it's more than one episode, that one. It is intense, and it's really, you know, and again, that's I think it's fair to say the bulk of that falls on the person that is not in the day job in the same way. I know it did with Tam and I. Now now we're separated and we're fifty fifty we're doing a much bigger share of the special needs admin, which has been an eye opener to me. I guess anybody who's doing the bulk of the day job Let's put it that way. I think it's worth looking at what we can do to relieve some of that enormous burden.

Mark H

And it is so. holiday times, well, it just goes nuts, obviously, because there there is no respite at all. So A lot of the time, I'm deliberately taking holiday during school holidays at times just to take the boys out. So it's me and them of a gap. But just there's simple little things like I mean, Louise likes going swimming, it's headspace for her, it's exercise as well, which obviously has its own benefits. And we would carve out kind of okay, on a Wednesday night there's a lane swimming thing, so I will block out my work diary to go I am leaving at five o'clock. Don't give a crap. I am going home. So I can do the boys' bedtime. Louise can go for a swim and have kind of an hour, hour and a half to herself. on a Wednesday afternoon, on a Sunday morning we'll do a similar thing and we'll have a lazy breakfast with the boys whilst Louise rushes off to go swimming. trying to find little gaps and little ways of building breaks into it. So there's at least some headspace.

Mark A

Yeah, and it is so important though, I think, you know, and it's something that I'm guessing not all families Do? I don't know. I'm guessing, you know, so if as a NeuroShambles listener, if you are the day job person And you're not insisting on carving out some time for the person that's at home most of the time Step up man, it's really important. I think, you know, it is because I think it's it sometimes can be easy to overlook because Work is stressful as well. So sometimes it's easy to get in your own mind and go, Look, I'm stressed at work. I'm stressed by being the breadwinner, right? The stress of my job. If I lose this job, we're screwed. So that has its own stress. And sometimes it can be easy to take your eye off the stress that's happening at home or to sort of too neatly compartmentalize those two, as in that's your job, this is my job. Because you get holiday off work. You don't get holiday off parenting.

Mark H

We quite often end up with a basically a fun little ballroom dance circling round one another. where I'm trying to find things that I can push Louise towards and go, Get out of the house, go and do it go and do this find something you want to do, I will find time to cover it. And at the same time, she's circling around the other way and going, Well, you've had a really long, shitty week at work. Let's find a way of getting the boys out of the house. And I'll take the boys out on this so that you can have some downtime for yourself and a bit of quiet time to just recharge your batteries. And we're both kind of spinning spinning on opposite sides of a plate going, Well I need to help you.

Mark A

And I think it's important to have those conversations and to be open about it and just just, you know, just to reflect on how much capacity each of you have at any given moment. It's going to be an ebb and flow in any, you know, well-functioning partnership, and that's, you know, that's what it needs to be. One of the issues, I think, when you have a day job is Wonder working out how open you can be with your colleagues at work. Because there's a it's a big thing, right? What we're dealing with in our neuroshambolic lives is a lot to bring to someone. But also, it provides a really important context about your life and about the accommodations people might need to make for you and about your capacity And it's a really difficult thing sometimes to negotiate that. Because one of the worst things for me is seeing in the calendar that someone has booked a nine o'clock meeting for me with clients, right? Because I know that I will just be off the back of school drop off. And school drop off is never an easy ride. It's always a bit bumpy. And what people won't know is that when I get there, it I may well have been through a pretty harrowing hour, hour and a half already. to get there. I would just have managed to get myself a coffee and sat down at my desk. And then there's a client on a call and it's like, this is the last thing I need. But you can't say that. You've got to just switch that As you say, put that hat on and go be right, this is this. And you know, sometimes you can be quite upset about what's happened before. You might have left a kid in absolute tears or meltdown or anxiety at the school gate and then come straight back. And I don't know how open you can be with people about that.

Mark H

I think my personal situation Well, I should say, first up, I'm incredibly privileged with where I work and the grade I am because I am kind of the top of the tree.

Mark A

Right.

Mark H

So I get to dictate quite a bit. And equally, my firm is very supportive of the iType agendas. So we have a neurodiversity network that is very much kind of let's be aware of, let's support a part of the Sunflower Alliance and all this kind of stuff.

Mark A

And so you're are you quite open about your neuroshambolic setup at home.

Mark H

Absolutely not.

Mark A

Okay. Interesting. Even though you know that they're sort of understanding.

Mark H

It's partially down to me. I have a box of work and I have a box of home and I hate when the two mix. But it feels horrible. So we were going through the whole diagnosis thing and I absolutely hated it because I kind of had to tell my bosses. I felt I was probably obliged to let them know what was going on just because it was. I was taking random days off work to go and do assessments, and I was taking a couple of hours here and a couple of hours there because we had some counseling stuff going on. And I kind of had to go I'm going to be out for two hours. I'll find time. You know me. The work will get done. Don't sweat, guys. But I'm out for two hours.

Mark A

Yeah.

Mark H

And it It felt like you were admitting your child was broken. And I hated it.

Mark A

Yes. Because he's not.

Mark H

And he's bloody amazing.

Mark A

Yeah, yeah, yeah.

Mark H

And it was. It kind of felt similar to I imagine if you ended up having a terminal disease or cancer or something, you have to go and lay your soul bare and go this is what is happening and my life is completely up in turmoil. And I was like, it shouldn't be like this And to be fair, my fellow partner's got some experience of it and is bloody brilliant, but that conversation just felt so emotionally raw and so raw.

Mark A

Yeah. Especially when you don't know what's going on, right? So you're trying to work out what it is yourself, and then you you have to kind of have that conversation. And also, I think And inherently, there's this feeling that you don't want to come across as unprofessional or unable to do your job because of what's going on on the outside. No matter how difficult it is, you don't necessarily want that to spill over into work because work is important and you don't want to be seen to be compromised because of what's going on at home. Absolutely. So to have that conversation is a big step, and it's not an easy one to have sometimes. Now I will like from full, you know, full transparency from my side, my work is amazing. Like I'm very privileged to work there. I've been there for a long time though. So I've got credits in the bank in terms of you know, they know that I'm a worthwhile employee, you know, that and that I work hard. So I'm able to be really open with them. Like, I've got colleagues that listen to neuroshembles. So, um, hi guys. Um, but so they know what's going on. But not everyone is able to do that. And that is a really difficult thing to do: is to keep that all to yourself and to try and stop. it from impacting on your profession, which is sometimes a seismic task.

Mark H

We obviously had a couple of minutes. when we were well, when you were badgering me into doing this. And I must that that two minutes stuck in my head and it got me absolutely raging. Because by its nature, having kids fucks up everyone's life. Like your prioritize completely shift and they'll fall over playing netball at school and you'll have to take them to the A and E 'cause their ankles bust. Or they'll have a cold or they'll have a flu or the nursery will decide that this week's special, we don't like that, go away for forty eight hours. And yet for some reason, we, because of our neuroshambolic lifestyle, there's a sort of presense judgment of Well, if you've got a neurodifferent kid, then clearly that means you're not going to be able to cope with this, or you're not going to be able to be all over the shop. It's like, well, that's good to having a kid.

Mark A

Yes, it is. But I mean, you know, we will very often need more time off. I think that that is one thing that is quite a difficult thing to balance and one thing that filters through A lot, I think for me, certainly, because I'm sort of co-parenting a lot more with Tam The amount of time I have to take away, and it's not like whole days, but it's meetings, it's medical appointments, it's meetings with the CENCO, it's meetings with the LA, educational psychologists, therapists, counselors, tutors. Like, and I've got three kids, right? So even if I'm sharing half of that, that's still time that I need to take away. And I'll do it in my lunch hour, but obviously. That's the time that I'm not eating lunch or taking a break. And also, when I do that, then I need to make that time up. So I need to do that in the evenings when I've had a full day's work and I'm solo parenting three NeuroDivergent kids at that time and then it's like, right now to catch up on the work that I couldn't do. Not because I was doing anything fun, but because I was banging my head against the brick wall about an EHCP review. So obviously that does impact on work. And as I say, I'm very fortunate to be in a job where I can be open about that and that I'm never questioned for putting Mark on available in the diary. They're going to what you're doing. There's just an assumption that I'm going to make it up. There's a trust that I'll make it up. Whereas I don't think that trust is extended to a lot of people working jobs. I'm fortunate in that sense. And I think you're saying that you're quite fortunate in that sense because of your seniority in the company. But not all companies are understanding. And this is something that I started thinking about, and I think it's something that needs to change. Because I think parents of neurodivergent kids face a completely overwhelming burden Sometimes that is not accommodated in the workplace. So, and I'm going to tell you a story about a friend of mine. She's a very good friend of mine. And she has a neurodivergent daughter. And she also works full time in a law firm. And it's a big corporation. And when you work in big corporations, there is very little, I think, in the way of understanding if you can't, as they perceive it, do your job. And it's not that in terms of that she's not able to do her job, she's amazing at her job. But if she said, I have to take time off for this, or I have to take time off for that, she'd be seen as not professional enough and not reliable enough, and that would impact on her career progression. So what she's doing is having to hide the fact that she has a neurodivergent daughter. And I spoke to at length about this recently because Her neurodivergent daughter was school refusing, right? And that in itself is an incredibly difficult thing to do. Now, she's fortunate enough to be working from home. But she has a daughter in the house that she's having to keep a secret, which is a ludicrous situation that she's on a work call and hoping that her daughter doesn't need her, doesn't call out for her, or appear on the call, because then she'd have to be up front. I think it happened once and she was like, Oh, she's off sick hasn't happened since then. Apparently, if you're on a Zoom call, the blurry background's great. And having an incredibly good headset with a very directional microphone is really good because they can't hear the screaming in the background when Roblox has gone off. But what She's having to deal with not just in terms of that because she's she's also a solo parent She's also had to be taking time off For battling for accommodations for her daughter. She's had to deal with taking the LA to a tribunal to get accommodations and the postponements of those tribunals, and dealing with counselling and tutors, she managed to get a personal budget for her daughter. All of this while not being able to let her work know that she needs time off to do that and still being good enough at her job to be highly praised in the annual review and to be able to hold it down. And I cannot imagine the amount of stress that she's going under amongst all of this, like dealing with the challenges that her neurodivergent daughter faces and solo parenting and keeping a job with a a secret child is like it's staggering. And it it cannot be right that people are having to go through that and that there are workplaces that are have an environment that requires that to be a situation?

Mark H

It is insane. And I think a lot of businesses lose sight of the fact that the only reason they have a business is because of their staff. It's because of the people. And if you don't look after those people, I mean, if your friend went, you know what? Sod this. I can work wherever there's multiple different firms. I'm going to go to a different firm. I'm pretty sure her old boss Would be crying into his coffee on a Friday morning and going, How am I going to replace their? Yes, and yet they're not willing to put any of those basic like basic human actions in place before you get to the crunch.

Mark A

Yeah, but then then it that in itself is an issue in terms of finding another job, right? Because again, you apply for a job, how upfront are you about the accommodations that you might need to facilitate your child? Right. Because and again, this is something that she experienced in in this job. Like it was absolutely imperative that that they didn't know that this was going on in the first three months because that's probation and it can be viewed unfavorably by but corporations that are not kind of accepting of this sort of thing, it's incredibly difficult to basically do that and go through the go through the probation period and then Even now, very few people know that she has a neurodivergent daughter, and none of them know that she is off school completely. So there are tutors coming in and tutoring how she's going to, you know, my friend has got a personal budget, which is like unheard of, by the way. It's staggering that she's had the energy to be able to get this. But because she's got a personal budget, there's sort of tutors coming in and out, there's TAs coming in and out, they're taking her to pharma school, I think, or forest school or something like that. All this going on in the background. And having to keep that a secret is just staggering. But I really worry of the stress and the impact that that has on on her mental health. And it can't be right. And it's because there's an environment of be professional and there's a view that if you don't basically, if you're not showing up In the office every day at these times and these times, or if you have to take any time off, it's unprofessional, and you're going to be overlooked for promotions, and you're going to be sort of viewed as unprofessional when I guarantee she's probably better at her job than other people.

Mark H

Yeah. I I started off working in the city in large firms, large corporates up there. And absolutely, it was the job comes first. And there was a comment from someone at one point. It was thankfully before I had kids, but I think it was my wife's birthday or something like that. And I went, well. I'm going out this evening. I'm going out to dinner. I'm not staying late. You can have your pound of flesh tomorrow. It'll get done by the deadline. Yeah. Don't sweat it. And I distinctly remember the comment I got back was: well, she's only your first wife.

Mark A

I was like, my God.

Mark H

My intention is she's also going to be my last wife. So if that's your approach, frankly, And that was their approach to wives, so Christ knows what their approach would be to neurodiversity.

Mark A

Yeah, yeah, it's a real problem, and it's something that it's a mindset that will take a lot of shifting, I think. Yeah.

Mark H

And I still work with some London city firms. I still work with quite large firms of lawyers and things. And one of my good friends is at a sizable national, possibly even international law firm. And she absolutely gets it. And we have wonderful conversations about Neuroshambles as much as anything else.

Mark A

Lovely, lovely to hear.

Mark H

And yes. So I mean, it is slowly getting through. Certainly, to some extent, there are firms out there that even at the bigger scale are now quite alive to it. And I think it's. It's kind of moving in waves. There's obviously been sort of a a bit of a female revolution that still has ways to go. There's been a bit of the sort of LGBTQ plus revolution, which

Mark A

again still has ways to go.

Mark H

Kind of feel like we're maybe the next bubble that's that's going to start being accepted a bit more, but we're way in the shallows at the moment.

Mark A

Yeah, yeah, I think we've got a long way to go, but I'd be keen to kind of open that conversation about that. I have a theory. that parents of neurodivergent kids are incredible assets to any business. In a way that people don't understand because they don't see what we have to deal with and what we have to do. I had an email from someone recently from a Neuroshambles listener, which got me thinking about this. And I'm going to read it out because it was great, right? And this is an email from Sarah Kalmuck from Canada, which is delightful. So it's not just a UK issue here. And she sent me this email. I'm just going to read it in its entirety. And she said, In 2000, just before the pandemic hit, I went on stress leave from my job to keep myself from going completely insane. And I figured I'd be off For a couple of months, or maybe a year at most, just to get things settled down a bit. But here we are, almost six years later, and I'm still on leave. My skills are too out of date now to go back to that job, so that got me thinking. What are the transferable skills and knowledge that I've gained as a full time caregiver to NeuroDivergence? What jobs could I do? And then she listed them She went, My experience in food services is extensive, so I could definitely make an excellent waitress or short order cook. Every day I cook and serve at least four times a day. No one can agree on anything except pasta and chicken fingers, so I'm very good at preparing multiple different dishes simultaneously, and I would be more than happy to deliver the food to you. I've also gained invaluable experience as a high pressure negotiator. I know how to exude calm with volatile people and when to offer a bribe. I'm well versed in most mental health pharmaceuticals. I can even compound medications into delicious liquids if swallowing pills is off the table. I would also do well as a personal support worker in a nursing home because I get daily practice completing personal hygiene tasks for others. I can even dress a patient while they're under a blanket. Personally, I have limited experience as a teacher, but lots of parents like us have oodles of practice teaching. They might not even need to get a formal teaching certificate to qualify. I'm sure there are lots of other jobs that would be well qualified to do given our daily challenges. So I love that email, not just because it's funny, but it's highlighted something really important that I I kind of want to draw on today is that the skill set that parents of neurodivergent kids have almost accidentally picked up while raising our kids It's phenomenal. I think the vast majority of parents of neurodivergent kids now are empathetic, they are patient, they are resourceful, they are resilient, they are persistent. They are calm under pressure, and they are absolute masters at multitasking. Right? These are assets for any job in the world. And the ability to be able to do that and holding down a job should be something that is lauded and revered and encouraged. But so many parents in this situation are having to navigate their way around it and hide their light under a bushel. That should be the first thing on your CV, right?

Mark H

It should. And the level of emotional intelligence and the level of just working out what's making someone else tick. Yeah. Yeah, yeah, yeah. kids don't tell us what the hell's going on in their head. You sit there and you watch what they do and you watch how they react, and then you have to piece all of that together to go that's actually what's driving you, and that's actually what's working. And you apply that to people in the workplace. All of a sudden your team's humming at one thousand miles an hour And they're all sitting there going, We're really happy with this. We're not entirely sure why or what's changed. It's like, well, because I've worked out that actually you're motivated by this and you want that, and you're uncomfortable with.

Mark A

There are so many roles where those skills are valuable. And it feels like a lot of parents of neurodivergent kids are having to hide that because it's not valued by businesses. So I had an idea. What if that skill set was actually seen to be the asset that it really is? And that someone would create a recruitment company purely for parents of neurodivergent kids, knowing they've got those skills under their belt, right? Offering flexible work and making accommodations specifically for those parents to work. when they need to, knowing that they are basically have been forged in fire. They can deal with anything. I don't I mean, I don't have the capacity to do it myself, but surely someone out there could make use of these people. People.

Mark H

There must be a way. I'm now mentally going through a list of recruiters that I know, going, right, which one of these can I pick?

Mark A

There you go. Yeah, so if anyone wants to start that, feel free to take it. Because I reckon that you know, it's so hard for parents of Diodivergent Kids to find a job that is going to be able to give them the flexibility and reduce the stress of having to hide what what is going on behind the scenes. Yeah, then if you if you are such a recruitment company, then get in touch with Neuroshambles and let me know. I'll give you a shout out. Another of the issues about how open you can be at work is if you can't be that open, there are some conversations that are typical work conversations that are really hard to navigate. when you're a parent having your adivergent kids. One of them is, how was your weekend? It's like, you don't actually want to know. Because I could tell you, I could tell you. I thought I'd lost at least one child at some point and I was never getting a meltdown with another one whilst being sworn at by the other. How in depth can you go?

Mark H

I so I'm laughing in part because I had exactly the same train of thought when I was thinking about doing the podcast and the kind of the topics that you were talking around. Because I went on holiday for a week to Norfolk and I came back. And obviously you go for on holiday for a week and the first question everyone asks because it's the sociable thing to do and the neurotypical norm way of Welcoming someone back. How was it? Did you have fun? And every single response I got was, so I either went with the slightly jokey, I could do with the holiday to get over my holiday.

Mark A

Yeah, yeah.

Mark H

Which is just a sort of glib brush off, basically.

Mark A

But everyone says that, but they don't fucking mean it like we mean it. No, no, I fucking meant that.

Mark H

preferably without anyone else in a darkened room with a large bottle of gin, frankly. And the other one was very much a sort of yeah, yeah, we we did a bit of crabbing or yeah, yeah, we had we had fish and chips, or you pick on one little there'll be a little Yeah. And you just talk about that that that little bit and you're like, no one's quite twigged that that was probably at most two hours of a eight day holiday.

Mark A

Yeah, yeah.

Mark H

Because you don't want to sit there and oh, how was your holiday? Well, to be honest, it was a bit of a shit show. Half the time it felt like I was tiptoeing around a nuclear, an like unexploded nuclear bomb. The other half the time was probably negotiating with the terrorist who had the trigger for it. Oh, but there were occasional moments where it was quite good fun.

Mark A

Yeah, so you just sort of, like you say, you just sort of generic brush off that kind of thing. Yeah. And It's similar if I take time off to, you know, to parent the kids when Tammy's away or whatever. That's time off work. And then people have this idea that you are you've gone to a spa for the whole time or that you're got getting pedicures and manicures and no, I'm just keeping shit going. Basically, I am just trying to hold it all together. So when they say, oh, did you enjoy your time off? It's like, I mean, I didn't not enjoy it, but it wasn't time off.

Mark H

It doesn't count as time off because it's a damn sight easier being here than it was being there.

Mark A

It's harder work. And I can actually have those open conversations with my colleagues, you know, and they get it, which is nice. But again, if you're not in a work environment that encourages that, then you do have to just sort of shrug and go, Oh, yeah, it was feels fine and then they think you're being all secretive and makes it up.

Mark H

And it's people expect you to come back from holiday. refreshed, relaxed, and having this bound boundless energy and a sunny disposition for a couple of days. Whereas mostly what I do is come back and over the first few days I'm a rumpy Because actually I'm probably tireder and more stressed than when I went away.

Mark A

Yeah.

Mark H

Because I've not only had a week of dealing with life but also all the stuff that I left before I went on holiday, you then have to quickly gather up and catch up on the work side of things. So you end up just sitting there going, well Well, I'm not refreshed. I'm not refreshed in the slightest. I'm actually a bit fizzy myself.

Mark A

Yes.

Mark H

And now I'm sitting down and looking at this mountain of 15 different things that I thought were in a better place than they were or have come up whilst I was away.

Mark A

Yeah, yeah, yeah, yeah. I had that, um, recently. But what uh my colleague at at work did, which was phenomenal, I didn't ask him to do it. So, thank you. He didn't book any face-to-face calls with me and clients for the first day Yeah. And he was in charge of my diary. So he could have done. He could have been like, he's been off for ages now. Let's just but he didn't do that. And that was so needed to just get back into it and go, oh, this is what work looks like. I'm not suddenly face to face with the client having to pretend that everything's fine. I could settle into it and, you know, so that's what a kind of accommodation in the workplace looks like, isn't it? I guess it's just having an understanding. You know what? he's gonna need that time, you know, and um it's not hard, but it is just having that understanding. So it yeah, it was massively appreciated.

Mark H

Just the mental the mental space sometimes. I have school drop-offs booked in my diary now. Just My kids are now going to two different schools, so you can't be in two places at the same time, it turns out. So I'm having to take one of them down, and I generally take Tom because he goes straight in. But then I'm into the office at maybe quarter past 20 past nine. Because it just pushes everything back that little bit. The number of times people will either still stick a meeting in for nine o'clock, to which you have to turn around and go, I'm not going to be there. I am physically cannot do this. You can see my diary.

Mark A

But sometimes you intend to, but like if you're doing a drop-off and it gets tricky that morning. Or you're doing a pick up and you have to have an extended debrief, which I've had to do sometimes when Otto is completely melted down and then I have to work out what's gone on with you know, and have a long chat with the teacher and try and bring Otto down and then, you know, get him home. Sometimes, despite your best intentions, you're not able to make that call. But The stress of knowing you have that call, and in the middle of this meltdown, having to text someone and go, It's not going to happen. Can you push it back? Which doesn't Thankfully, it doesn't happen very often because I build in that bit of a buffer, but sometimes it does. And the added stress of having to deal with that whilst having an eye on the fact that, you know, I've still got workshop to do when I get back in. It's enormously stressful. Yeah.

Mark H

It all mounts and mounts and mounts. And it's very hard to find that time to kind of take the pyramid of glasses apart before it falls off the table.

Mark A

Yes.

Mark H

And that's the constant challenge of just kind of throughout, I think throughout the working week in particular, you just keep stacking glasses on top of one another. as you do in a pub when you're a youth. And it just builds higher and higher, and you have to find some mechanism, some way. Talking earlier about finding space for your other half, you've got to work out between you some mechanism where you go, right, this is the point where actually I take some glasses off this stack or I split the stack into two things on the table.

Mark A

Yeah.

Mark H

Because if you keep going and keep going and stacking it up and stacking it up and thinking that you can just keep rolling that cycle, at some point all the glasses fall off the table and you're in a world of

Mark A

Yes, yeah, yeah, yeah. And you're in a situation and I'm in a situation where we we have a workplace's understanding of that. And if you don't, then yeah.

Mark H

What are you supposed to do? No, no, genuinely, what are you supposed to do? Yeah, yeah, exactly.

Mark A

But just, you know, shoulder the burden and and

Mark H

Yeah, I hope no one's a cup.

Mark A

Oh, yeah, that'd be helpful. Yeah, yeah. I did suggest to my friend that if her daughter walks in on a meeting, just suggest that she's got a really young cleaner. Just start him young. It's fine. Okay, one of the issues about juggling the work shambles balance finding a balance between the work and your neuroshambolic lifestyle is there is an unavoidable economic impact on parents of neurodivergent kids. That again, I don't think is spoken about very often. And this is something that I started to look into. And I found something that was I found a report that was produced in December twenty twenty four by the London School for Economics. the LSE. And this report was called The Economic Case for Prioritizing Autism in Policy and Reform, which is sounds dry, but it's really important. And it's basically an in depth look at the economic impact on parents of raising neurodivergent kids because the cost to us as parents is actually enormous. They've they basically estimated that because of reduced employment opportunities, because of all the stuff we've talked about and the fact that we have to reduce hours, for example, or find flexible roles or be overlooked for promotion. Costs parents of autistic children around five thousand eight hundred pounds per year. I mean, I think in a lot of cases it's going to be significantly more than that. And this is just for autistic kids. This isn't like taking into account the ADHD kids that are impacted by that. And they they estimated that it adds up to five hundred sixty million pounds. in productivity loss annually in the UK. And this is because, as I say, parents have had to cut hours, they've got to leave jobs or turn down career opportunities because of care needs. One of the statistics was that three in four parents of send children have had to quit work or cut hours.

Mark H

So you've got, you know, like you've got me, you carried on working, and then you've got

Mark A

Three others who you're the one, you're the one who's duty percent, you're the rogue one, but even then it that's not to say it doesn't impact you. It impacts you enormously, you know, because again, you're losing a proportion of income because predominantly because of the care needs of your kids.

Mark H

There's an impact on the individual family, as you say. You lose a wage, you lose an income. But my head almost flips around to the other side, which circles back to your recruitment point of I mean, I know my wife, and she's more intelligent than I am. She's more hardworking than I am. And she deserves to be way more senior than I am in whatever it is that she wants to do. She's looking after two kids at home. Like the lost opportunity for industry, for the UK economy, for all of those employers out there is astronomical.

Mark A

Yeah, and if you think about it as well, because this is a point that the the Neuroshambles listener that wrote in, Sarah, said is that by the time she's able to go back to work, there's going to be that huge kind of employment gap. And there'll be that perceived skills gap that actually, you know, she's picking up superhuman skills that could be Definitely used when, you know, when your kids are sort of old enough to not need that sort of intense care. So again, yeah, just sort of saying that she'd be an asset. If she wants to start a recruitment company for similar parents of neurodivergent kids, maybe it's maybe it's her.

Mark H

the economic side, I think the other there's the income, which is obviously kind of what we're talking to in three out of four parents reducing hours, reducing roles and so on. Yeah. I don't know about you, but my outgoings are higher as well. Because there's stuff that gets thrown against walls and there's at the weekend a drone that got stood on because it wasn't flying how we thought it was supposed to fly. Now I'm pretty sure that's user error, but That drone's looking pretty bent right now, irrespective of whose error that was. So you're kind of a double loser. You're losing that income that you're talking of of the kind of five grand or so a year, which As you say, I'm amazed. It's as low as that.

Mark A

I don't know quite how they got to that, but it but it is.

Mark H

I was expecting you to say a week when you hit five grand.

Mark A

How big was this drone?

Mark H

Maybe not quite that big. But it is you both sides of the scale are tipped against you.

Mark A

Yes, because you've also got therapy and counseling and diagnosis. you know, which is not cheap, but if you go private, all of these things are huge outgoings.

Mark H

Yeah.

Mark A

But I think w the what the LSE were pointing to Is the cost to business?

Mark H

It's like when they're sort of talking about, oh, an extra bank holiday would cost the UK economy X in million pounds because all the shops would be shut and stuff like that. They're trying to imply that, but. I mean, I think their metrics are way off. Yeah. Because I think losing Louise from the workforce alone would cost the company more than five grand a year, frankly.

Mark A

Yeah. Yeah, yeah, yeah. What the LSE report also sort of said. and I'm very clearly highlighted, is that it's systemic barriers are the cause of this. They were sort of saying that the fact that parents of autistic kids aren't able to kind of access the same employment opportunities is not just because of personal choices, it's because of systemic failures. So it's lack of school support, it's insufficient mental health provision, it's the amount of fucking time it takes to get a diagnosis. It's like and the c care needs of our kids. So what's happening is that the parents are having to carry the burden of this when the public services don't step up. And what they're saying is that actually the systems are there, they're just not being effectively used. Which I thought was an interesting finding as a result of it. But my favorite sort of outcome of this report was basically saying that actually supporting autistic people and their families It's not just like a nice thing to do. It's not just a good thing to do. They boil it down to making economic sense, right? Because they were like, it reduces family breakdowns. It reduces the mental health crisis, which all of these things cost the state more money. It reduces school exclusion. It reduces institutional care. And all of these things further down the line, if they're not kind of handled earlier on cost money, right? So their point is that these systems are in place, but they're poorly allocated because the sys services don't meet the needs effectively. And if there's systemic change, then we don't have these same issues. I will put a link to the full report in the show notes because I'm not entirely confident that I've represented it adequately. It's very in-depth But I thought it was a really interesting way of highlighting the imbalance in how parents of neurodivergent kids kind of face the world of employment.

Mark H

And I think fundamentally we need the LSE's the world to be doing that research. Because whoever's sitting in Parliament at any given moment in time, the lovely bunny hugger argument of it's the right thing to do for people and kids and all the rest of it takes you so far. But if you can turn around and go, if we do this right, it's going to save you X million in your NHS budget on mental health. It's going to save you Y billion in it's going to generate economic growth of As soon as you start putting numbers to it, that's it, right? MPs are going to perk up and go, you know what? And even corporates, your friend's law firm, at the point where they go, wait a minute, if we got this right we could be making even more profit and sharing that among ourselves.

Mark A

Bloody hell, guys. If you put it in those terms to a corporation as well, you're right, because ultimately governments and companies are looking at the finance. We live in a capitalist society. It's the bottom line. They've got shareholders and taxpayers to Account for. So, you know, they only really motivated by the economic argument, and that is frustrating because it ap, in my opinion, absolutely shouldn't be based on that. But there is a strong economic case for this in the example of the companies If you can accommodate people who have neurodivergent kids, then they're not having to take time off work for mental health. They want to stay at your company. Well, you know, I've been at my company for 10 years and a large part of that, not just because I like the job and I like the people, but because I feel like I'm accommodated for. It's a work environment that suits me. why would I want to try and look for another job that potentially doesn't give me those accommodations? And they're not massive accommodations, but it's what I need to be able to keep the The delicate balance of work and home life going, and to be good at my job, and you know, to retain my mental health. So if corporations can do that, I'm sure there's an economic argument for reducing the amount it takes to recruit as well.

Mark H

The challenge is always quantifying it. Because there will be an economic payback, but it's one of those where you almost go, suck it and see, guys, put it in place, and you'll find yourself in a better place in five years' time. No one signs up to it. What you need to do is. like the LSE paper does, you need to sit in front of them and go, here's a direct link, here's a causal relationship between you make these changes you will get X amount more revenue or you'll get lose X amount less in cost, which is really hard to do with soft and fluffy things, you know, like people.

Mark A

Yeah. Yeah. Like people. Yeah, exactly.

Mark H

People. World would be so much easier without people, wouldn't it?

Mark A

We don't live on a spreadsheet. Okay, so let's look at the positives of this. Obviously, you know, I genuinely think that as you pointed out the the LSE report, putting things into monetary terms is positive. as you say, because people aren't sort of generally swayed by the emotional argument and it's less tangible than an actual kind of monetary figure. There's a positive of being able to juggle that work, is that if you find yourself in an environment, in a work environment that accommodates that We are bloody excellent employees. I'm not just saying that about myself. I'm just saying, like, we are loyal because why would we want to look elsewhere if we feel valued and we feel accommodated for? But also, we have that skill set that we were talking about earlier: that we are forged in fire. We are, you know, reliable, steadfast employees. So I think that's a positive.

Mark H

Have you any positives? I think the the one that I've particularly found is that it's all a little secret squirrel. we've kind of touched on the fact that you don't particularly want to be open, you don't particularly want to discuss. But I have increasingly found one or two people across my firm who are in the same boat as I am. And it's you kind of start a conversation and then it drifts and drifts and drifts and you go, Are we talking about? And when you find those people, it's so enlightening because you suddenly have a little light bulb moment and go, you know what? We're all rowing in the same direction in the same boat here. And it's really it's a lovely little a little firework moment for me when you kind of find that person and you end up having a conversation where you both go Your home life as shit as mine. How the hell do we do what we do when it Yes, but it is, like you say, it is secret.

Mark A

So I think, you know, the more open we can be about these things which a huge part of that is on the companies to facilitate and foster an environment where that can be more openly discussed, then the better it is for everyone's mental health and everyone's capacity to to work and continue to work.

SECTION INTRO

Neurodiversity champions.

Mark A

Okay, so let's look at some neurodiversity champions. Now these are people or organizations that are doing wonderful things in the world of neurodiversity. Do you have any neurodiversity champions for us, Mark?

Mark H

So I had two. So one of them that helped me really at the start was actually Bupa Medical Insurance. Okay. Which is a bit left field. I mean, I had it through work, and it was one of those where you go, I might actually read some of this because for the first time ever, I might actually have something to do here. They emphatically do not cover diagnosis of neurodivergent conditions. So that was straight out the window. But they have a specialist mental health team that you get through on the phone to someone who actually knows what the hell they're talking about. After about five minutes of talking to them about the stuff that were really struggling with Ben's behavior at the time, they immediately turned round and said, you know what? you need some support and signed off on up to 20 sessions of CBT so cognitive behavioural therapy oh wow okay I hung up the phone within about 30 seconds I had a text message with the authorization code and all the rest of it And they just straight off the bat signed off twenty sessions.

Mark A

Amazing.

Mark H

They knew we were doing a diagnosis at the time, so they knew that there was neurodivergence sitting in the background there. But basically, just purely off the mental health perspective, they got us access to a therapist. So literally we just got to walk into therapy sessions like every other week or every week at the time, I think it was. Yeah, which is great.

Mark A

Okay.

Mark H

We had no idea what way to turn at the time, so it was a massive, massive benefit for us. But the lady on the other end in the ment their mental health team was just phenomenal. She absolutely got it, was really empathetic. So I was really impressed it was there.

Mark A

All right, thanks for that. And you've got another one, right?

Mark H

The other one's a little local thing for us.

Mark A

I love them. I love a little local one. I'd love to know what's going on elsewhere in the world.

Mark H

So there's two ladies in the village I live in who have started up a coffee morning. So every fortnight, a little coffee morning, which is called Send Help.

Mark A

Why has that not been done before? That's amazing.

Mark H

Yeah, it's brilliantly catchy, but they have neurodivergence in their family themselves. They're at local schools and stuff like that. couple of flyers that have turned up in the village going, I'll meet at this hall at ten o'clock on whatever day. Yeah, my wife went along to it and came home just absolutely bubbling about it because they not only were there with tea and cake to have a chat around people suffering the same kind of challenges, they turned up with massive ring binders of legal documentation

Mark A

Oh, right.

Mark H

This is the journey through the EHCP system. And this is, and do you want to see all the evidence that we've stacked up to support our side of the first time that anyone has actually gone. Here's the real world. Here's an you can actually look at and turn pages off not guidelines not guidance, but here's an actual real world bit So they're doing off their own bat, they're doing an absolutely phenomenal job. The next one, I think, is tomorrow morning. But yeah, every fortnight, tea and coffee to just catch up with

Mark A

Yeah, which is wonderful as the people who have been through that journey, just helping to guide other people through the minefield that is the diagnosis process, the EHCP process, tribunal process, all of this. You know, it really kind of warms my heart when other parents of neurodivergent kids help out. people who are going just starting that nightmarish journey. And yeah, that sounds wonderful.

Mark H

Yeah. So big shout out to them.

Mark A

I don't know how they've got the time to do it, but yeah, shout out to SendHelp.

SECTION INTRO

Tiny Epic Wins!

Mark A

Okay, so it's the tiny epic wins now. These are the things that win in a neurotypical family would not be a massive deal, but for us they are major wins. Have you got any tiny epic wins for Esmark?

Mark H

So Saturday just gone, we went and watched a taekwondo training session with me and Ben. And it's something which. sort of encouraging him to see if he wants to get involved with but it was a hall we'd never been to a group of people we'd never met before in a completely different village And there was a big class on before us who were all churning out the hall.

Mark A

Yeah.

Mark H

A big group of parents and kids going into the hall.

Mark A

This is stressing me out.

Mark H

It took him four attempts to get through the front door.

Mark A

Whoa, okay.

Mark H

But he got through the front door. We got into the hall. and we sat down and watched the entire hour which ADHD kids sitting down for an hour. I was like, what the hell? And he sat and watched it. And at the end of it, he said that he wanted to come back and actually try training. But just the fact that he managed to get over his four massive wobbles where he started running off down the street and he came back from But you know sit in the hall and I was like it's one of those with it precisely what the tiny epic wings is all about really like and you're a typical kid It'd just be like yeah, it's a bit busy and then I walked in and sat down

Mark A

Yeah, got over it. But yeah, that's a huge step to get over that over the door because, you know, it's overwhelming and it's dysregulating. And, you know. And was he making the choice to go in? Like, he was like, I want to do this. Yeah, I mean, there was a lot of conversation, as you might imagine.

Mark H

But at the end of the day, I kind of went, Look, if this is too much, we can go home. It's not a problem. I don't mind. And he went No, 'cause I'm interested in this and I want to see it, but we peeked through the door first. And can I go and stand outside the door and peer into the hall? Are they all going to be looking at me? And step by step by step, he slowly talked himself through the door.

Mark A

It's huge because he's regulating himself. He's doing what he needs to navigate quite an overwhelming world at the age of eight.

Mark H

That is that is awesome. He is phenomenal.

Mark A

Well done, Ben. Yeah, that's excellent. Okay, I have a little tiny epic win relating to work in that the other day India did not interrupt me at work. Right She listened to me because normally She's the worst one for bur basically bursting in. And she's she's hilarious when she does it. And like if I'm in on an internal call, they all know India. And she'll just sort of flout in and she sees the camera and she sees her face on the screen and she starts gurning at the camera. And It's really it's funny. She's so funny. So people quite like it. And she's not disruptive. She'll just kind of mill around. And that's okay. She gets that I'm working. But There was one what the one day the other day where it was a really important call with a client and I'm pitching a really big project. So I was like, look, it's really important that you don't interrupt me On this call. Like, I know you don't normally listen, but this one's really important. And she was like, but I don't have anything to do. And I was like, well, why don't you use your, you know, your stop-motion video thing on your iPad? She started getting into that on her iPad. It's really, really lovely. She'd be really creative. And then she was like, Okay, fine. And she went off. And I heard some shuffling outside the door. I was like, oh. Please don't come in. And but she didn't come in. And then I forgot about it. And I had the call, and that was fine. And then I hung up off the call and I opened the door. And what she'd done is put the iPad on the floor. In front of the door with a note that just said, Play me. And she'd done this stop-motion video thing and then just left it outside the door. So the first thing I saw when they opened the door was what she'd been up to, but she didn't interrupt me. She listened and it was just like I was just it was so adorable and it was a huge win that she actually did that. And um, yeah, it was it was delightful.

Mark H

And was the stop motion video really good as well?

Mark A

It was genuinely good. Yeah, she did rock, paper, and scissors having a conversation. That's it. It was really good. Yeah. Yeah, it was great.

SECTION INTRO

What the flip?

Mark A

Okay, what the flip moments now? These are the moments where our children will say or do something that completely flummoxes us and you know I they these happen fairly regularly to me. Do you do you have any of these, Mark?

Mark H

It doesn't come out with many, but one that we did have a couple of weeks ago was we were sitting down having dinner And he just sort of went, I don't like barn animals. And we were sort of going, okay, we were talking about your school. And you've now announced to us that you don't like barn animals. All barn animals? Is there a subset of barn animals?

Mark A

No, blanket, blanket no to all barn animals.

Mark H

Wild animals love them. Zoologist in the making, absolutely adores them. But barn animals, apparently, are no going.

Mark A

As soon as you introduce a barn into the mix, it's a hard no.

Mark H

We did eventually work out that so his school has a chicken.

Mark A

Okay.

Mark H

Seems to have free roam with the school. It's all a little bit okay. Great. Fine. And they were looking for a chicken monitor whose job, as far as I can work out from what he told me, was going around picking up the chicken's poo. I was like, that sounds like a genuinely crap job.

Mark A

Yeah, literally.

Mark H

But off the back of that, he was like, I don't like chickens and therefore I don't like barn animals. So as soon as we had a conversation at school, it was, I just want to make clear, I don't like barn animals. I am not going to be a chicken monitor.

Mark A

Okay, we can do that. I love it, but this is one of those things where you think you're having a conversation with them, but their mind is in a completely different place. So I have a what the flip moment is exactly this with Jay. I can't even remember what the conversation was about, but he was think he was looking into the distance, and I wasn't sure whether he was thinking or not. But then he turned back to me and went How many pillows would it take to smother the average birch tree? And I was like, I don't know. I was thinking it was just an open question, but he had an answer. He was like 197 So he thought he thought about it he'd done some kind of calculations Not sure how. I didn't didn't really question the methodology. I just went, Oh, right, okay. Well, if I need to smother a birch tree, I'll let you know. We'll pop off to Dunelm and we'll p stock up some pillows.

Mark H

You see that the massive, massive pedant in me wants to get into a conversation about photosynthesis and the fact that trees generate their own oxygen Actually, you couldn't smother it.

Mark A

Anyway, I was too confused to have a counter-argument. I was just like, yeah, fine, fine. Thanks for that. The other one I had recently, which was staggering in its beauty. Again from Jay, is he went, I have two questions for you. What is masturbation? Strong start, right? What is masturbation? Also, how big is the world's biggest gong? Right? So, I've got like Which way do I go? Why, like, you know, they're two biggies. You know, we're going to have to have a proper sit-down conversation for both of these questions. Like, let's tackle the gong one first, and then and then we'll, you know, we'll find a time to do the other one.

Mark H

Um yeah.

Mark A

Just completely... like how he held those two thoughts in his mind and presented them at the same time was like huge. Just really, really baffling. Okay, that is it for this episode of Neuroshambles. First of all, Mark, thank you so much. Firstly, for being a dedicated listener and for writing in and, you know. And agreeing to come on, because I do want to talk to more NeuroAssembles listeners and get them on. It wasn't too painful, was it?

Mark H

I would encourage everyone to do it as long as I don't have to do it again.

Mark A

Fair enough. So thank you for coming on and taking part in NeuroAsembles. Also, thank you to the listeners for continuing to listen and for commenting on the socials and for downloading episodes and all of the great engagement that we've had so far. It's really, really appreciated. If you want to leave any reviews for Neuroshambles on the podcast platform of choice, that would be much appreciated. And you can also get me on the socials, on Instagram, or Threads, or Facebook. Or TikTok. But I think that's it for now. All that remains for me to say is have a nice life.